My advocacy efforts spur from my own personal experiences as a patient with Ehlers-Danlos Syndrome, Chiari, MCAS, Dysautonomia, Hypokalemic Periodic Paralysis, CRPS, POTS, and several other rare & chronic illnesses. While serving as Miss Frostburg, I use my educational platform, "But You Don't Look Sick" - Making Invisible Illnesses Visible, to raise awareness about invisible illnesses. I have shared my story (translated into 8 languages) with the world - most knowing me as the beauty queen with a 25" scar down my spine. After 10 brain and spinal neurosurgeries (due to EDS) I am a living example of how to live beyond your illness and beyond any obstacle that life throws your way!
Victoria is the face of resilience and perseverance! At 21, she founded her own non-profit, to collaborate resources within the invisible illness community all while using her remarkable story to mentor others like her, such as my daughter, through the Miss America Organization's IMPACT program to raise awareness for EDS and invisible illnesses. — Ashton
I’m a Patient Leader